How fibromyalgia develops over time and how 1/4 can be cured

You can find the video after the text

If you have fibromyalgia, is it possible to be cured from the disease? 

In this video, I will tell you how the disease usually develops over time and how 1/4 of those with fibromyalgia can get well, or at least so much better that they no longer meet the diagnostic criteria for the disease. 

My name is Andreas Persson and I am a physiotherapist and specialist in pain and pain rehabilitation.

One of the first things I was told when I started working in specialized pain rehabilitation was that people with fibromyalgia and many other long-term pain conditions never get rid of their symptoms. 

This was something to be told to all new patients so that they could move forward in their acceptance process and give up the fight to get well, as the hope of getting better was considered an obstacle for them to live a functional life.

There is a truth in that, people with fibromyalgia who do not accept their situation suffer more and are functioning worse in their life.(1) If you always think that the cure is around the corner, you do not solve important problems in the present. You postpone them and think that I will fix it when the pain has disappeared.

At the same time, I do not think it is good to say something that is not true. I have met several people with fibromyalgia who have gotten rid of their symptoms or at least become so much better that they no longer meet the diagnostic criteria for fibromyalgia. There is also research that shows that some people with the disease can get well.

In a study on people who had fibromyalgia as children or in their teens, about 15% were pain-free 6 years later, which on average for the group was at 21 years of age. Only half of those who were diagnosed as children met the relatively strict diagnostic criteria for fibromyalgia at the follow-up. 

However, the majority of those who did not meet the criteria still had symptoms. The study shows that many who are diagnosed as children get milder symptoms in the future.(2)

In another study of people with generalized pain, which includes fibromyalgia, the incidence at different ages looked like this. You can see that the incidence increases up to the age of 60-69 and then decreases clearly.(3) The fact that the increase in generalized pain decreases from the age of 50 and that the incidence decreases for those over the age of 70 suggest that many who get generalized pain and fibromyalgia get milder symptoms at the age of 70. I think I know why and will tell you more about it later.

In a Swedish study, scientists looked at how the symptoms changed over 10 to 12 years in 126 people with fibromyalgia or generalized pain. At the first assessment, the participants were on average 45 years old. 63% of them had severe impairment from fibromyalgia, 28% had a moderate impairment, and 9% had mild impairment. 

At the follow-up, 10-12 years later, it looked quite different. The proportion with severe impairment had dropped to 33% and mild impairment had risen to 34%, which meant that the symptoms and their impact on life had decreased for many in the group. 

The pain decreased on average for the participants and it decreased by at least 30% for a quarter of those affected. For 16%, the pain had decreased by more than 50%.(4)

But what is it that makes some people improve so much? It is not known for sure, but I have a hypothesis that I want to tell you about. The hypothesis is based on the various risk factors I mentioned in the video ”What causes fibromyalgia”.(5) 

In the video, I talked about the five risk factors for developing the disease. They are: Injury, lack of sleep, stress, infection, and genes. If you think this sounds interesting, check out the video on my youtube channel. There is some evidence that some of the risk factors not only trigger the disease but also partially drive it.

With today’s knowledge and technology, it is not possible to do anything about the genes or that an infection can trigger fibromyalgia from the beginning, but there is quite a lot you can do to affect the risk factors injury, lack of sleep, and stress. 

If the factors remain in a person who has fibromyalgia, they probably still contribute to maintaining the fibromyalgia symptoms and by affecting the risk factors, one can influence the symptoms.

In various experiments, scientists have succeeded in triggering fibromyalgia-like pain in the short term in both humans and animals through injury (6,7), lack of sleep 8-10), and stress (11), which disappears after the exposure. 

What is then to say that if any of these factors persist in a person with fibromyalgia that they do not at least to some extent drive the symptoms? There is also some other evidence that that shows that reducing these factors in those with fibromyalgia also reduces the symptoms.

I believe that injury, lack of sleep, and stress drive the symptoms in many people with fibromyalgia and that the factors can be influenced in a positive direction in at least a quarter of those affected so much that the fibromyalgia symptoms can decrease significantly or disappear completely.

But how do you know if injury, insufficient sleep, or stress is driving your symptoms and how can you influence these factors to reduce the fibromyalgia? I’ll tell you about that next.

Injury

We start with the risk factor injury. How do you know if you have an injury that drives the fibromyalgia symptoms?

In fibromyalgia, it is easy to believe that pain from a certain part of the body is due to an injury. Especially if you find some kind of objective sign or if you have ever damaged the body part before. But in many cases, the pain is mainly due to the pain system being more sensitive. This means that it is not the injury that drives the fibromyalgia but the fibromyalgia that causes most of the pain from the area.

But in some cases, there is an injury and associated inflammation in one part of the body and if there is, it probably contributes to driving the fibromyalgia symptoms throughout the body. But how can you be sure that you have an injury and that it is not the fibromyalgia that causes the pain?

When it is possible to see clear evidence of an injury, that is severe swelling, bleeding, movement restriction, or obvious damage on imaging examination, for example in X-ray, in combination with a lot of pain from the area, there is likely an underlying injury and associated inflammation. 

Another thing that indicates that there is an injury is that anti-inflammatory medication has a good effect.(12

For people with fibromyalgia, an injury and the associated inflammation not only lead to local pain but also to aggravated pain throughout the body. If you can reduce the local inflammation and heal the injury, you can often also reduce the widespread pain.

In several studies on people with fibromyalgia or fibromyalgia-like pain scientists have found that when the pain signaling from an injury is reduced, the sensitivity of pain in the whole body decreases. 

In one study, anesthetic blockages were injected into the facet joints of the neck in people with generalized pain as a result of whiplash injury. The pain blocks reduced the sensitivity of the pain system throughout the body.(13)

In two other studies anesthetics were used to treat inflamed joints and muscles in people with fibromyalgia. By stopping the local inflammatory pain, the pain throughout the body was reduced.(14,15)

Another example is people with fibromyalgia with knee or hip osteoarthritis. A common treatment method for severe pain and severe degenerative changes in the knees or hips is joint replacement surgery. 

In a proportion of the treated, the pain in the joint disappears completely after the surgery, which also leads to a significant reduction in the widespread pain.(16) In those, the inflammatory pain from the osteoarthritis drove the fibromyalgia.

But for others who receive the same treatment, the surgery does not help. For those, the pain in the joint was probably more due to the fibromyalgia than the osteoarthritis.(16)

So if you have osteoarthritis that causes significant inflammation and inflammatory pain, you can often reduce fibromyalgia symptoms by treating the osteoarthritis. The same applies to other injuries, in muscles, tendons, ligaments, and other parts of the musculoskeletal system.

It is common for people with physically demanding work to develop fibromyalgia because they get injuries that are not allowed to heal. By reducing the workload and allowing the injuries to heal, these people can often reduce their fibromyalgia symptoms.

The same applies to those who have rheumatic diseases such as rheumatoid arthritis or ankylosing spondylitis. Fibromyalgia is ten times more common in those with these diseases and it is probably because the injuries and inflammation in the body drive the fibromyalgia.(17,18) If the rheumatic disease can be treated effectively, the fibromyalgia symptoms can also be reduced.

Insufficient sleep

The next driving risk factor is insufficient sleep. Just as I told you in the video about the causes of fibromyalgia, insufficient sleep significantly increases the risk of fibromyalgia.(19,20) At the same time, most people with fibromyalgia have poor sleep. Insufficient sleep that increases the pain and the pain that impairs sleep is a negative spiral that can be a strong contributing factor to the fibromyalgia not going away. 

But if you can improve the sleep, you can reverse the spiral and also reduce the symptoms of fibromyalgia.(21) But how do you improve your sleep?

The first thing you should do is review your sleep hygiene. For example, it is important to get up and go to bed at the same times every day, to have it cool, quiet and dark in the bedroom at night, to not sleep during the day, and to not be too physically active just before going to bed. It is also important not to ingest too much caffeine in the afternoon and evening.(22

There is also evidence that cognitive-behavioral therapy for insomnia improves sleep for those with fibromyalgia.(21) CBT for insomnia is a method with several components where you, among other things, work with thoughts and behaviors that prevent you from getting good sleep.(23)

There is a lot to do to improve bad sleep and these are just a few examples. I will probably make a separate video that goes deeper into this area in the future. Another thing that can impair sleep is too much stress. As I said earlier, stress is also a risk factor that can drive fibromyalgia.

Stress

A person with fibromyalgia who feels very stressed can probably reduce the symptoms by reducing the stress. Stress is a reaction in the body whose function is to improve our ability to survive. However, too much stress in combination with insufficient recovery is not good for health and can be a driving risk factor for fibromyalgia.(5)

There are two ways to reduce stress in life. The first is to reduce the situations that stress us, which is called stressors. The second is to improve the ability to withstand stressors, that is to become more stress-resilient.

One way to reduce stressors can be to change your job or to reduce working hours if you have a job that leads to a lot of stress. Another is to add more breaks during the day for more recovery. However, the goal should not be to reduce stress as much as possible because a meaningful life also means a certain level of stress.

People can improve their ability to withstand stressors by gradual exposure to stressful situations. As a result, they will not be as stressed in the future in the same kind of situation. This kind of exposure is one component of cognitive-behavioral therapy. 

Treatment is usually especially helpful for people who experience high levels of stress in specific situations that most other people do not find stressful. For example, if a person has some type of phobia such as social phobia or claustrophobia that has a major impact on life.(24)

Another way people can improve tolerance for stressors may be to take more control over their lives. People who do not feel that they can influence what happens in life experience more stress. 

A tool for more control is to work in a structured way with goals and consciously take steps to achieve things that are important in life. Structured goal work can give more control over what happens, which can reduce stress.(25)

Discussion

The driving risk factors for fibromyalgia are not the same in different people. In one person, the genes may be a strong contributing factor to the disease. Maybe there is no injury and only moderate stress and lack of sleep. In that person, it is probably not possible to reduce the symptoms significantly by treating injury and optimizing sleep and stress. 

In another person where the genes do not contribute as much to the fibromyalgia but where injury, lack of sleep, and stress are stronger driving forces, perhaps you can get better results by influencing these.

I remember a woman with fibromyalgia that I met while working at a health center. She had got the disease in the past year. When I interviewed her about her life, she told me that she worked as a cleaner on a ferry, a job that was both very physically demanding and stressful. Her fibromyalgia symptoms had started a few months after she started working. 

I told her that her work probably contributes to her fibromyalgia. When I met her a month later, she had quit her job and started studying. Her fibromyalgia symptoms had decreased significantly. She was still quite sore in her body when I pressed on her, but she was hardly bothered by pain anymore in everyday life.

For her, injuries and stress were strong drivers of the fibromyalgia. Her work was stressful and caused small injuries that were not allowed to heal because the work required her to put a lot of strain on the body and the injuries every day. When she quit the job, the fibromyalgia symptoms decreased a lot.

In some people with fibromyalgia, one of the risk factors largely drives the disease. By improving the risk factor, you can significantly reduce the symptoms. For example, I have met several people with fibromyalgia where it was discovered that they had rheumatoid arthritis. When the rheumatic disease was treated, the fibromyalgia symptoms also decreased. 

At the beginning of the video, I showed a diagram for how the prevalence of fibromyalgia changes over different age ranges and that I think I know why the increase in the number of people with fibromyalgia starts to decrease from the age of 50 and that the number who have fibromyalgia decreases significantly after 70. 

I think it’s because people stop working. Many have jobs that are both stressful and physically demanding. It is common for people with fibromyalgia to retire early, which I think is the reason why the increase decreases from the age of 50 and the decrease after 70 when most people have retired.

For many people with fibromyalgia, injury and stress are driving factors to the disease. It is common for people who work with physically demanding jobs to have injuries that are not allowed to heal and it is common for the work to increase the stress levels. When you stop working, these two driving factors decrease, which can cause fibromyalgia to decrease significantly.

I am aware that the claim that work contributes to fibromyalgia is like swearing in church, at least in Sweden where I live. This is because those who work and pay taxes contribute to the cost of living for those who cannot work and more people who do not work and need help with the cost of living mean higher taxes for those who work. Therefore, those who work want everyone who can work to do so.

Working is also important for most people because it gives life more meaning. The social aspect that you get in the workplace is important to feel good. A better alternative than sick leave or sick pension as an alternative to a job that leads to high stress and physical strain is to adapt the work so that it becomes less stressful and physically demanding or to switch to another job that is better in these aspects.

Given that I have mentioned that high physical loading in combination with insufficient recovery can cause small injuries that do not heal, it is important to clarify that physical exertion and physical activity do not have to be a bad thing for those with fibromyalgia. 

It is only when the physical loading significantly contributes to the symptoms that something needs to change. Properly dosed physical activity and exercise can actually reduce the symptoms. In fact, physical exercise is the type of treatment that has the best evidence for treating fibromyalgia.(26)

Physical activity was not mentioned in the video about the causes of fibromyalgia but it could have been. Properly adapted physical activity can significantly reduce the symptoms for many with the disease.

However, it is often difficult to adapt the training correctly and many need the help of a physiotherapist who has competence in chronic pain. Since properly adapted physical exercise can be a powerful tool for reducing the symptoms of fibromyalgia, you can add not adequate adapted physical activity or exercise as a driving risk factor for the disease.

And not adequate adapted means, too little, too much, wrong type, or a physical activity performed with insufficiently adapted technique. 

Watch my videos about physical exercise for fibromyalgia, nine rules for exercise with fibromyalgia, fibromyalgia walking program, and fibromyalgia exercise program for more tips on effective exercise.

Summary

So to summarize. The prognosis for fibromyalgia often looks good. Many get milder symptoms over time. A certain proportion of those affected become so much better that they no longer meet the diagnostic criteria for the disease. 

I think it’s because one or more of the risk factors that drive their fibromyalgia has changed. The driving risk factors that can often be changed are: Injury, insufficient sleep, stress, and not adapted physical activity or exercise.

For many that become significantly better, the change in these risk factors occurs naturally, such as. That they cut down on working hours or change jobs because they do not feel that they can handle the stress or heavy workload. 

But if more people with fibromyalgia become aware of the risk factors that drive the disease and make changes to reduce them. Then I think that more people can reduce their symptoms significantly, many so much so that their symptoms no longer meet the criteria for the disease.

If you liked this video, press the like button, subscribe to the channel, and tap the clock symbol if you do not want to miss more similar videos in the future. Check out my other videos about fibromyalgia and chronic pain on the channel.

References

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